Tuesday, 19 July 2016

I’ve spoken previously about the day that I was diagnosed with
pulmonary hypertension. There are a few moments that stick out from that
day that will probably stay engraved in my mind for eternity. When I
was first diagnosed, the doctor promptly gave me a life expectancy.
It couldn’t have come at a worse time. I was 25 and just starting my
career after working less than ideal jobs since the age of 15. I was
obviously devastated to hear that my life was ending during a time it
felt like it was just beginning. It felt like someone crumpled up
everything I worked so hard for and threw it in the trash. As I started
to cry my doctor said, “Any one of us could die at any time. I could die
in a car accident.” This was the first time I heard this expression,
but sadly, it wasn’t the last time.

As the days, weeks, months,
and even two years have dragged on, numerous people have told me that
anyone could die at any point, that the future is promised to no one.
While I am aware of everyone’s mortality, living with a fatal illness is
a very different experience than the advice I have been given. I know
that the people who have said that “anyone could die at any moment” and
“the future is promised to no one” are attempting to comfort me.
However, these pieces of advice are often coming from a very privileged
source. The doctors who have told me this are able to work full days and
have a family. The people my age who have told me this are purchasing
their first homes and traveling.

The advice that “the future is
promised to no one” is often said in an attempt to equalize my situation
with the rest of the population. Unfortunately, I am not like the
majority of the population. I had about a one in a million chance of
developing idiopathic pulmonary hypertension. Because the disease is
considered rare, Canada does not have access to less invasive medications that have been available on the market for nearly a decade. Because PH is so rare, medications are very expensive, meaning that new medications are not always introduced in Canada, or are not approved for funding.
Pulmonary
hypertension causes damage to the heart and lungs, eventually leading
to organ failure and death. It is a progressive disease that leaves many
people breathless and disabled. I myself am disabled because of
pulmonary hypertension, and am oxygen-dependent for certain activities. I
was on oxygen 24/7 for over a year after diagnosis. Knowing that PH is
progressive, and that I might be that sick again, is very frightening.

While
death is promised to us all, there is a difference between living with a
fatal illness and living without one. Although I try my best to live in
the moment, there is often a dark cloud hanging over me. I worry about
what will happen to me. I worry about the slow progression of the
disease leading to further disability and death. Life is filled with
difficulties and tragedies. However, not everyone will understand the
feeling of the dark cloud that living with pulmonary hypertension can
put over your life. Able-bodied people who say that “everybody dies” in
an attempt to over-comfort are forgetting one of the scariest things of
living with a fatal disease: the progression.

In some ways, fatal
illnesses are almost romanticized by popular culture. There are so many
movies who have used this plot to write a love story. While I am very
lucky to have someone who has stood by me through all of this, I know
that having a fatal illness is not a selling point. It can create a lot
of chaos and complications.
My life revolves around medication, doctors’ appointments, tests,
restrictions, limitations, disability, and oxygen. I know that not
everyone is as lucky to have the kind of love I have in my life.
Life-threatening diseases are scary, and sometimes they chase people out
of our lives.

I often feel like I am living a fine line between
quality and quantity in my life because I choose to do what I can while I
can still do it. While all of us will someday die, not all of us will
have to live with the burden of having a fatal illness, especially as a
young adult.

What’s the worst piece of advice someone has given you about living with pulmonary hypertension?

Tuesday, 12 July 2016

Do you know what the Spoon Theory is? Have any of your friends called themselves a Spoonie?
I
didn’t know what the Spoon Theory was until a few months after I was
diagnosed with pulmonary hypertension. I found out that I was Spoonie
after reading more about the theory. If you have a chronic illness, like
pulmonary hypertension, you might relate to the Spoon Theory as well.

Friday, 8 July 2016

I am excited to announce that I have a weekly column called "Life with PH" over at Pulmonary Hypertension News. Please be sure to visit the source below to read my first entry about my experience wearing oxygen in public, and whether it helped raise awareness for PH.